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Treatment cycling back: intralesional steroids
I've been reading more about them, especially since my latest derm, whom I really like, says that she has had success with them for FFA sufferers. I refused them after I was first diagnosed (in a pretty early stage) last spring, although if the dermatologist who diagnosed me had suggested them I might have tried; only a later dermatologist whom i saw about diffuse scalp pain suggested them, and by then I had heard so many horror stories of head dents and atrophy. I had resigned myself to shaving my head when this got advanced, so I wanted to keep my nicely shaped head.
Now, nearly a year later, I am reading a bit more. They seem to work best in the extremely early stages of progression (oops), and that they can cause further loss and atrophy in the advanced scarring stages. I am somewhere in between these, I think, and I am going back and forth. I'd love to hear, not only about the experiences of those who got the shots, but what stage your FFA was in when you got them.
Replies to This Discussion
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Permalink Reply by Jules Australia on
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Hi Agneta, If I ever get the chance to travel to your part of the world, I'd come visit & give you a huge hug....and yes coolness of the scalp (& body temp)certainly seems to help calm the eerie discomfort & odd scalp sensations that some of us experience; And while quite a few of us have many of these symptomatic similarities (slow creeping hairloss,including eyebrows, eyelashes,facial, arm/leg hairloss, minute papules,etc etc),i'll never really understand the variations with the disorder....where other women are asymptomatic showing no signs of redness and no/
or very little scalp itchiness or tenderness at all, & yet still seem to have the typical chronic progressive loss
eventually leading to requiring toppers/wigs etc. I have chosen not to take any meds or treatments, other than for
a few months (topical corticosteroid; & for me anyway, they were useless) around time of my biopsy diag(middle 2013). Over the years, I have done so much research on
lpp/ffa (articles on pathophysiology, treatments/meds etc) & combined with the stories/journies, experiences of women from this forum, there appears no conclusive efficacy that these treatments greatly influence or alter course of the disease.Potential Side-effects & risks (known&unknown) also discouraged my desirre to try them. That's not to say I haven't been in a quandry over this,I have; if some of these meds were proven to be a 'dead-set'Cure (& you didn't have to take them long term i'd probably jump on it. Sometimes I feel the anxiousness (which takes away our peace of mind & sense of well being)caused by living with chronic condition is as bad as the condition itself. Agneta, what length of time have you been on the meds/treat's; have you experienced similar scalp discomfort to mine, & do you find symptons wax & wane. How long did you have symptons of ffa/lpp before starting meds?? PS I would also be lost without the wonderful SUPPORT of this forum & from all the LOVELY LADIES sharing your challenges,ups & downs& everything in between that this disease launches upon us on a daily basis.....THANKYOU ALL xx -
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I am SO thankful to have you all here. This disease is so bizarre and awful that I don't know what I would do without you.
I don't understand the variations between us either. As you said most of us have the creeping forehead hairline loss, temples, sideburn loss and eyebrow loss which is beyond awful but I could almost work towards acceptance of all of that but with the strange scalp sensations and the awful itching it's driving me crazy. I'm also going through a bad time right now where the places I've lost hair on my body itch so bad, my eyebrows itch, all around my eyes itch and now around the nape of my neck (discovered patchy hairloss on the nape of my neck. I had no idea that that was part of FFA?).
Why does this happen to some of us but not all of us? My skin is so mottled now and my dermatologist says it's from the vellus hairs but that also doesn't seem to happened to everyone.
I have diffuse thinning all over and my hair is a totally different texture than it was a year ago. Why is that? Is there something else going on?
I am very sensitive to medications and with no real evidence of any of it working I've also chosen to not go down the medication route. I do still use Tacrolimus topical but when I have a flare with the itching it feels very internal to me?, I feel like I'm having hot flashes again?, like something is going on hormonally?
I love the positive enthusiasm from the ladies wearing wigs but there is absolutely no possible way I could wear a wig when my scalp is so sensitive like it is now. I'm gluten free now. Has it helped? so hard to tell because I was doing fine and now the itching.
And yes I do think the anxiousness from all of this is part of the equation as well as stress but right now is the least stressful time I've had in my life in 3 years and I feel horrible. It doesnt make any sense. Maybe that's the most stressful part of all of this. None of it makes any sense. There is no direction to go, everything we try makes no difference. THANK YOU ALL. This is such a lonely bizarre disease that changes who you are. Knowing you are all there and understand is beyond huge for me.
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Hi all, so far I have been spared the itchy scalp, it sounds absolutely horrid, painful and worst of all I imagine a constant reminder of the horrible condition. Thanks again all for your info, advice and support, I have a pharmacist review re prescribed drugs ( script still not filled) next week, although not holding out for much new info. I really think my dermatologist was more interested interesting female patterned hair loss than FFA..which leads me to believe it's all hit and miss, and those people that were lucky enough to have success in stopping disorder it may just have been the disease burning itself out rather than the meds. Everytime I feel a slight itch on my scalp I immediately think ...my hair line is actively receding again, Annie may, I truely hope someone on this site has at least a suggestion, product to help with the itch...can only imagine how painful ly irritating it is. Someone did post somewhere using la Roche posay thermal Springwater spray for itch...of course I ran out and bought some, it is rather refreshing don't know if it helps but I have become obsessed about using it on my scalp. Take care all, hope we all find some answers soon.
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Annie May I think tat some of us have Diffuse LPP as well as FFA. Some of the articles on LPP describe scalp hairloss as most often multi-focal areas (that often eventually join up) OR more diffuse; also that the nape is often an area of involvement in LPP for patients that may have LPP but not necessarily FFA. It sounds as though you & I,along with others here (from their descriptions) most likely have both FFA & diffuse LPP, hense loss from nape and diffuse.
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